More work to be done to change donor policies
These four researchers across Canada are working towards less discriminatory solutions
By Nathan Woolridge and Karina Zapata
Ninety two per cent of gay, bisexual and other men who have sex with men (gbMSM) would donate blood if it weren’t for Canadian Blood Services’ (CBS) current donor policies, according to the Sex Now Survey. The survey, often referred to as the “gay census,” is the largest and longest running survey on gbMSM health in Canada.
Kevin Allen, lead researcher for the Calgary Gay History Project, is one of those men. Having been in a monogamous, HIV-negative relationship for nearly 30 years, Allen knows he is not a threat to CBS’ blood supply — yet he is unable to donate blood unless he doesn’t have sex with his husband for three months.
“If they changed the [policies] tomorrow, I would give blood. I would be the first in line,” says Allen.
His husband, Gordon Sombrowski, would still be ineligible to donate blood if the policies changed after living in England during the mad cow disease outbreak between 1980 and 1996. However, he says that the blood supply would increase exponentially if they lifted the restrictions for gbMSM.
“I think at some level there is a certain generosity that is more prevalent [in the LGBTQ2S+ community] just because of having to be more self-sufficient,” says Sombrowski. “We've had to take care of each other. I think it's part of the culture.”
David Brennan, a social work professor at the University of Toronto, agrees with Sombrowski.
According to the Sex Now Survey, 92 per cent of gbMSM would donate blood if they could.
“There's actually a tremendous amount of research that actually shows gay and bisexual men are some of the most altruistic people in the community. When you think about when HIV first hit, gay and bisexual guys really jumped in and created these organizations and services.”
Andrea Carter, director of programs at HIV Community Link, says these policies aren’t only holding back the LGBTQ2S+ community, but they’re also holding back the complete elimination of HIV by furthering the stigma surrounding the disease.
“It's unscientific, it's stigmatizing, it's discriminatory and it's scientifically redundant. There's no evidence-based [reasoning]. There's no science to support it. Essentially, it is just based on misinformation and stigma from this situation we were in over 40 years ago,” says Carter, referring to the tainted blood scandal.
Both Allen and Sombrowski say that, in order to move forward to less discriminatory policies, CBS needs to act based on science and follow the research that has already been done.
Through all of the feelings of discrimination following the blood ban and the eventual changes in donor restrictions for gbMSM, there are indivudals across Canada working hard to push for future changes in these policies — some in collaboration with CBS.
This is what they’ve found.
Nathan Lachowsky — University of Victoria
Nathan Lachowsky is a primary researcher for the Sex Now Survey on gbMSM sexual health. Photo courtesy of Nathan Lachowsky
Nathan Lachowsky, an assistant professor for the School of Public Health and Social Policy at the University of Victoria, is working on opinion and evidence-based research in order to change the current policies put in place.
“At the end of the day, I believe that we need the biological and the behavioral evidence,” says Lachowsky. “I think we need to make sure the evidence that we have will create confidence for those who are the policy decision-makers and also from the community.”
This is why Lachowsky is collaborating with CBS. The organization is currently working with community stakeholders, policymakers and researchers to improve the eligibility criteria for gbMSM blood donations.
“As a science-based organization, the eligibility criteria to donate blood are subject to change. As science evolves, so do eligibility criteria,” CBS said in a statement response to our questions. “The work in this area is not done, and we do foresee future changes.”
To work towards these changes, in 2018, CBS announced it would be helping manage 15 research projects to evolve the eligibility criteria for gbMSM blood donations.
“The goal of this unique research funding program is to generate adequate evidence to inform alternative screening approaches for blood and plasma donors,” CBS said.
Lachowsky is involved in several research projects funded by CBS and is also a primary researcher with the Sex Now survey.
The Sex Now survey, says Lachowsky, was originally founded as a way to collect the thoughts and opinions from the gay community by the gay community. Over the summer of 2018, Sex Now conducted over 3,500 in-person surveys and collected dried blood samples from individuals in 15 cities across Canada.
Lachowsky says research like this helps match opinion-based evidence with biological evidence of how gbMSM individuals could pose a risk to the blood supply. In 2018, this research found that extremely few — less than 0.1 per cent — of men had HIV and were unaware. Lachowsky emphasizes that 92 per cent of gbMSM respondents said they would donate blood if they could.
“That's a huge number of potential new donors that might be able to donate blood if the policy was changed,” says Lachowsky.
Lachowsky proposes that new policies should be gender-neutral and based off of behaviours outside of who you are and who you have sex with.
“We would love all of those policy alternatives to be gender-neutral. The idea is that it doesn't matter what your gender is or what gender your partner is,” says Lachowsky. “What matters is changing some of these other characteristics around sexual practices that really would increase the risk [to the blood supply].”
Other researchers like Daniel Grace, Rob Higgins and David Brennan have done work with Lachowsky, either as principal investigators or co-investigators on studies about gbMSM donor restrictions.
Daniel Grace — University of Toronto
Daniel Grace was part of the team conducting the Engage study. Photo courtesy of Daniel Grace
As Canada research chair in sexual and gender minority health at the University of Toronto, Daniel Grace has been involved in several research projects and papers — some funded by CBS — about gbMSM-donor policies and says there are a number of areas that can be improved upon.
Grace suggests CBS should move towards more risk-behaviour survey questions, better communication from CBS and more policies based on scientific evidence.
“[We need to] look at the policy, which is not in keeping with scientific evidence and the work of researchers and activists trying to mobilize in order to get the policy to reflect what we know about the transmission of HIV,” says Grace.
Grace has been specifically involved with the Engage study, which conducted several in-depth, qualitative interviews with gbMSM individuals living in Vancouver, Toronto and Montreal.
Engage is a large socio-behavioural and biomedical study focusing on GBM health, HIV and sexually transmitted and bloodborne infections, according to the study.
He says the study discovered that participants found the policies to be discriminatory and also confusing.
“The vast majority of the men we interviewed were very critical of the policies, which were specific for men who have sex with men. They wanted a blood donation policy that was the same for everyone,” says Grace. “Some men didn't understand why MSM are being deferred or weren't being allowed to donate blood when all blood was going to be tested.”
CBS confirms it tests all blood for syphilis and hepatitis B and C and many other viruses and diseases, but says while advances in technology has “allowed us to catch new illnesses earlier in our testing,” that there still exists a “window period during which a virus may not be detectable.”
According to Grace, it’s the lack of communication and dialogue from CBS that’s harmful. He says gbMSM have a lack of knowledge about the rationale behind the restrictions, adding that there needs to be more education from CBS.
Grace, like other researchers, acknowledges that some suggested questions — possibly for a new donor-eligibility survey — may make donors uncomfortable in the screening process, which could lead to less people donating blood. But, through better communication, he says, this could be avoided.
“Ensuring that people continue to donate blood is really important. But, I think the way that you do that [is to] clearly communicate that your policies for donation are scientifically-based and that you're asking questions and screening donors in a way that is based on the most up-to-date science.”
Rob Higgins — Community Based Research Centre (CBRC)
Rob Higgins believes Canadian Blood Services' donor policies for gbMSM will eventually change. Photo courtesy of CBRC
Rob Higgins first discovered the blood ban when he was completing his undergrad. Higgins says he participated in a blood drive that his dorm was running and at that time, the ban was for life. Higgins says he was turned away by a nurse, which was an uncomfortable experience — mostly because he wasn't out yet.
“I was starting to come to terms with my sexuality, but I wasn't there yet. And this was an unwelcome kick in the pants, if you will,” says Higgins. “I had some awkward explaining to do after that with the guys that I lived with.”
CBS says it empathizes with individuals like Higgins, who had a negative experience while trying to donate blood.
"We recognize that being turned away from donating blood can leave a donor feeling hurt and rejected, especially because blood donation is a purely altruistic
gift, and this can be compounded when we’re engaging with a group that has experienced longstanding marginalization and stigma related to their sexuality,” CBS said to us in a statement.
After this personal experience, Higgins found the blood ban periodically making an appearance in his professional life. He says at one point he was working on Parliament Hill as a parliamentary assistant and began engaging with the issue with constituents and stakeholders.
Eventually, Higgins had the opportunity to join the Sex Now survey as a research manager, which at the time was under a new research structure, says Higgins. He says when Lachowsky mentioned a focus of the survey would involve the deferral issue, he was sold on being a part of the survey.
“I think generally the reaction was, ‘We don't understand why this policy is necessary.’ There was frustration around the kind of light that [the ban] had shone on the community and members of the community,” says Higgins. “The general feeling was that this was sending a negative and stigmatizing message about us in our community.”
Higgins suggests new policies should be “gender blind.”
“I think that's how we remove the sexual orientation piece out of it,” Lachowsky says, adding that they’re working closely with CBS’ Centre for Innovation on policy updates.
Higgins believes there will eventually be changes to CBS’ gbMSM-donor policies, but he still feels like there’s still a way to go. Higgins says ultimately it comes down to finding a process that everyone feels comfortable with, including donors, recipients, CBS and community members.
“[CBS’] Centre for Innovation is interested in finding a way to make this change, but it needs to be done correctly. It needs to be done by [maintaining] patient safety first and foremost,” says Higgins. “I don't think we're going to do away with deferral periods entirely. Some deferral periods will always be necessary. I don't think they need to be based on sexual orientation or the gender of your partner, the way that they are now.”
David Brennan — University of Toronto
David Brennan has been involved with HIV work since he came out in the early 1980s. Photo courtesy of David Brennan
David Brennan has been involved in HIV work since he was a college student in 1983. As soon as he came out, he saw how the fear and stigma surrounding the virus was affecting him and other gbMSM.
“I had a sense of justice and a desire to fight fear with action,” says Brennan.
He first started this fight by working in an AIDS hospice in Boston. He then worked for AIDS Action Committee — an organization that works to stop the epidemic by tackling the root causes of HIV and AIDS — for 10 years. So, naturally, when Brennan did his PhD, he focused on HIV, its treatments and how it affects gbMSM.
Now, outside of his job as a professor and associate dean of research at the University of Toronto, Breannan is the founder and director of CRUISElab, a “community-based,
interdisciplinary social work lab examining the health and well-being of gay, bisexual and two-spirit men.”
In 2016, the CRUISElab team worked on a research study, #iCruise, which looked into the sexual behaviour of gbMSM in Ontario and how they interact with and experience online sexual health outreach. Soon after, Brennan reached out to CBS for funding to follow this research using past #iCruise participants to look into alternative screening policies for gbMSM.
As the principal investigator, Brennan, alongside Lachowsky, Grace, Adam Barry and Trevor Hart, conducted the research study, “Assessing alternative Canadian Blood Services blood donor deferral screening policies for men who have sex with men.”
While the study is yet to be published, Brennan says they learned a lot about possible alternative screening policies.
“We actually have 16 different possible possibilities,” says Brennan. “And we got a sense of people's desire, willingness and eligibility based on all of those.”
One realistic possibility, Brennan says, is to continue screening out gbMSM for blood donations — and then ask further questions to determine whether they truly are at risk for HIV, such as whether or not they have had unprotected anal sex.
“I'm telling you, the most knowledgeable people about HIV transmission are gay men — unbelievably so because we've had to be because our lives have depended on it. And so, people will be like, ‘Oh, they know what they're talking about.’ Now, it comes across as, ‘They just don't want my blood because I'm gay.’”
Brennan believes that, above all, CBS needs to start working on repairing their relationship with the LGBTQ2S+ community after rupturing it through their discriminatory donation policies.
“Even though gay and bisexual men are very directly affected by this, it is also impacting other LGBTQ2S+ community members that want to stand in support of gay and bisexual men,” says Brennan. “CBS has to think about a way to have conversations about what's possible to repair that relationship.”